Study Area

The present study was conducted in the Khurda district of Orissa, an eastern state of India. This district is known for endemicity of LF caused by W. bancrofti, transmitted by Culex quinquefasciatus [11]. The study area is rural in nature and its inhabitants are mostly small farmers and daily wage labourers. The economic opportunities for daily wage labourers are greater in the monsoon period and sparse during the rest of the year.

Research Methods

This paper is based on ethnographic data, for which the protocols were developed during the LF socioeconomic studies mentioned above [7],[10]. The data for this paper were collected during 2003. Prior to this, the project protocol was approved by the Scientific Advisory Committee (SAC) of the Regional Medical Research Centre, Bhubaneswar. The SAC reviews and approves the research projects for their scientific and ethical merits. A summary of the methodology is presented in Table 1.

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Table 1. Methodology at a Glance.

https://doi.org/10.1371/journal.pntd.0000414.t001

Eight focus group discussions were conducted among hydrocele patients and community members separately. Focus groups are widely used to examine people's experience of diseases [14],[15]. They are useful for studying dominant cultural values, such as narratives about sexuality [16],[17], and actively facilitate the discussion of taboo topics. Participants can also provide mutual support in expressing feelings that are common to their group but which they consider to deviate from mainstream culture [16]. Standard guidelines were followed for conducting focus group discussions [16],[18],[19]. Due to the sensitivity of the topic, focus group discussions with community members were conducted separately among men and women. The focus group discussions were conducted in Oriya, the language of the state of Orissa. Question guides were used to ensure that the moderator addressed all the issues to be discussed by the group. Separate guides were prepared for patient groups and the general community. Initially, these guides were prepared in English and translated into Oriya, and all translated guides were reviewed for linguistic reliability and correctness. Later, these guides were piloted with groups similar to the participants' groups, but from villages that were not included in the study, to check appropriateness, clarity, and flow of questions. The duration of focus group discussions varied between 60 and 90 minutes.

To elicit the views and experiences on the impact of hydrocele, in-depth interviews were conducted with hydrocele patients, wives of hydrocele patients, and key-informants in the community. In-depth interviewing offers the respondents the opportunity to express their own ideas and address themes that the researchers may not have anticipated [20]. Key-informants are individuals in the community who possess special knowledge and who are willing to share their knowledge with the researchers. They have access to the culture under study in a way that the researcher does not [18]. The procedures for selecting key-informants and conducting in-depth interviews were based on standard guidelines [18],[21]. All of the interviews were held in Oriya and the duration of these interviews ranged from 30 to 75 minutes. Separate interview guides were made for the three categories of participants. These guides were prepared and finalised in the same manner as the focus group guides.

Participants

Participants for focus group discussions and one-to-one in-depth interviews were selected by purposive sampling from 12 villages of Khurda district, Orissa. In purposive sampling, researchers choose study sites or informants to represent the range of variation on those characteristics that seem to be meaningful for the topic under study. In this situation, a small number of specially chosen informants can yield valid and generalisable information [18]. Participants were selected from all of the villages to the extent possible. During epidemiological investigations [11], a door-to-door survey was conducted and all individuals in these villages were physically examined for different signs and symptoms of LF. A cohort of 115 patients exclusively with hydrocele was available. These patients were identified for in-depth interviews and focus group discussions, and only those who were married and below 50 years of age were selected. Hydrocele patients who possessed other LF symptoms like lymphoedema were not included. To conduct a focus group discussion with hydrocele patients, six to eight patients from two to three villages were consulted and requested to arrive to a particular place at a particular time. These villages are closely situated within a distance of 2–3 kilometres. Further, they share several common places like agricultural fields, markets, a health centre, etc. Hence, people of these villages were known to each other. Two focus groups consisted of eight patients each and a third group consisted of six patients. The hydrocele patients who were chosen for in-depth interviews were not included in focus groups. The selection of women whose husbands suffer from hydrocele was also made by identifying hydrocele patients from the cohort. These patients were not covered for in-depth interviews and focus group discussions.

Key-informants were also selected from all of the villages, based on the guidelines mentioned above. The key-informants were village/community heads, members of local administrative bodies, and teachers residing in these villages. All of these informants were educated, having at least a school education, and were up to the age of 70 years. For focus groups with community members, participants were selected from within a village. Two groups of women (consisting of six and eight members) and three groups of men (consisting of seven, eight, and eight members) in the age range of 20 to 50 years were selected. Women participants were housewives and the men were farmers and agricultural labourers. Some of the participants did not have any formal education, while others had received formal educations of up to 5 years. During the recruitment of focus group participants, it was ensured that all participants knew each other, and care was taken to maintain homogeneity within each group. Participants having similar socioeconomic characteristics (like education, income, occupation, and caste affiliation) were grouped together.

The purpose of the study was explained and consent to participate in the study was obtained orally from all of the participants, as suggested by the SAC. Oral consent was obtained instead of written consent, as the majority of the study participants were illiterate. The consent of the participants was recorded along with the recording of the interview/discussion. In addition to obtaining consent from each participant, the consent of the community leaders and village heads was obtained to conduct the surveys in their villages and communities. None of the participants declined to particpate in the study.

Research Team

The researchers and staff who assisted during the conducting of focus groups (SM and ANN, and those listed in Acknowledgments) are aware of local language and culture. The discussion/interview guides were prepared initially in English to ensure that all the issues and objectives of the study were covered comprehensively. The focus group moderators were trained medical anthropologists who were experienced with conducting focus group discussions on LF-related issues. The moderator conducted the focus group discussions, while observers watched and took notes on the discussion, as well as on participants' actions, gestures, and emotions that could not be captured on audiotape. The observers transcribed the focus group discussions. The in-depth interviews were conducted by the same researchers who acted as moderators of the focus group discussions. Focus groups as well as interviews with female and male participants were conducted by female and male staff, respectively. After each discussion/interview, the team along with the primary researcher discussed what had transpired and reviewed the observers' field notes on impressions and observations.

Data Management

The entire discussion/interview was recorded on audiocassettes. Later, the audiocassettes were played back and transcribed into Oriya with the help of field notes. The Oriya scripts were translated to English and were entered into a personal computer in MS Word as text files [22]. The analysis was done by using ATLAS.ti for Windows 4.1 (Scientific Software Development, Berlin). This computer-based analysis facilitated selecting relevant quotations from the text, coding, annotating, and comparing the quotations. The coding plan was developed based on the issues related to the effect of hydrocele on conjugal life and marriageability. The quotations of each code were retrieved for each category of participants by using a text-based selection option. Thus, by summarising the quotations of each code by category, a matrix was developed to examine the qualitative data.

Effect on Sexual Life

Data revealed that hydrocele is always a burden to the patient and to his family. In addition, the most worrisome effect of hydrocele for patients and their spouses was the inability to have a satisfactory sexual life. Of the 32 patients interviewed, 30 patients (93.7%) expressed their frustration due to their incapacity during sexual intercourse. All respondents interviewed except four (87.5%) reported that they get severe pain during intercourse and hence they avoid sex. They also perceived the dissatisfaction of their spouse due to their incapability during sexual intercourse. A young hydrocele patient during an interview said, “The hydrocele has affected my sexual life. I could not do much … . My wife is now not interested to have sex with me. Seems that she hates me… and advises me to go for hydrocele surgery.” Another patient narrated, “My spouse has no complaint, rather she is very cooperative in this matter. However, my sexual desire has declined drastically over the years. I develop an acute pain in the scrotum during and immediately after the intercourse.” However, in focus group discussions with hydrocele patients, a few participants argued that it has no gross impact on sexual life, though they do experience some pain. However, the groups reached consensus that their condition has influenced their ability to have sexual intercourse.

Of the 35 women whose husbands are hydrocele patients, 33 women (94%) reported dissatisfaction with their sexual life. Some women (25.7%) complained that a failure of erection and penetration occurred during intercourse due to the larger size of the hydrocele scrotum. About half of them said that hydrocele patients have lesser sexual potency than normal men and they thought that hydrocele is responsible for male impotency. Many of these women (68.6%) also reported that their husbands became hesitant to have sex and subsequently lost interest in it. In the voice of the wife of a hydrocele patient, “When the disease becomes prolonged, the front portion of male genital becomes very small and the scrotum gets unusually large. Eventually that leads to male impotency.” However, about 6% of these women reported that they did not perceive any problem. This reporting might be due to the following: (i) some men are in an early stage of hydrocele and might not be affected much, and/or (ii) these women may not choose to reveal this private information. A few women could not speak openly, as the issue is sensitive and related to their family. A 28-year-old woman, whose husband is a hydrocele patient, said, “Yes, there is problem. How there shall be no problem? There is a major problem at the time of intercourse. But I do not like to reveal it to everybody. For instance, when we are served food by our guests, we normally accept it irrespective of whether or not we like that food. For certain things, I cannot tell to my husband, he may feel bad about me. Though we are not happy on bed, I manage it without showing sense of dissatisfaction.” This study found that the wives of many hydrocele patients persuaded their husbands to get a hydrocelectomy. In one case, it was found that the wife of a hydrocele patient was no longer interested in sleeping with her husband. In another case, as narrated by a woman respondent, a woman had left her husband and gone back to her parents' house out of frustration. During one interview, a woman reported, “A newly married girl of our village recently left her husband and went back to her parents' house due to this problem. We stay with our husbands because we are old and have children. The younger generation girls are not that much adjustable.”

The general community also reported similar views about the effect of hydrocele on the sexual life of patients. Of the nine key-informants in the community, eight informants (89%) revealed that the hydrocele patients feel pain during sexual intercourse. They also said that, as the penis of hydrocele patients get shorter, they fail to satisfy their wives during sexual intercourse. These respondents became aware of these issues through casual discussions and gossiping with the affected people and other community members. Hence, these respondents discussed these issues in a generalised manner without referring to a particular person.

General Marital Life

Concerning marital life, the hydrocele patients revealed several issues. During in-depth interviews, half of the 32 patients agreed that they and their wives are not as happy as they were before the development of hydrocele. When they were asked whether or not both of them live just like others, about 40% of patients said that they are not like others, as their condition hampered their economic situation, because of loss of work capacity, and led to dissatisfaction in their sexual life. About one-third of patients said that their spouses were hesitant and did not like to go out with them. Approximately one-fifth of patients revealed that their wives expressed dislike towards them. The focus groups of patients also revealed that communication had deteriorated between the couples and the quality of the marriage had been affected.

About half of the women (17/35) whose husbands have hydrocele told the interviewers that their husbands' activities were affected adversely due to hydrocele. These respondents reported that patients get severe pain in their genitals (scrotum) and feel too weak to perform hard work. Approximately 60% of women felt sorry for the condition of their husbands. About one-third of the respondents reported that the disease has affected the economic condition of their family. Some of these respondents (11.4%) reported that their husbands drink alcohol to get rid of the pain and other problems associated with hydrocele. A few women said that they frequently quarrel because of the disease and their relations are deteriorating. The following statement of a 40-year-old woman reveals the agony of such women: “My husband has a big hydrocele. He is not able to move and work freely. He feels ashamed to make his appearance in public places. He is now not even fit for conjugal life.”

The community members also perceived the problem of hydrocele and revealed that the disease is affecting people physically and psychologically. They mentioned several instances in which the deterioration of relations between wife and husband and disturbances in conjugal life had occurred.

Effect on Marriageability

The hydrocele patients also revealed the impact of hydrocele on marriageability. They said that one should remove it by surgery before going for marriage proposals. All patients agreed that it is difficult to get a bride for a hydrocele patient. Some patients in focus groups said that some men remained unmarried due to their condition, but this was denied by a few patients. However, all focus groups of patients agreed that it is problem for young men to get married, as the patient cannot work or even walk properly. In the present study, the hydrocele patients anticipated problems in getting their children married due to their disease. This disease is considered hereditary and people think that the diseases get transmitted to the next generation. When their sons suffer from hydrocele, it then becomes increasingly difficult for the parents to obtain spouses for their sons.

The women whose husbands have hydrocele said that the hydrocele patient is the “last choice” and that some girls are reluctant to marry hydrocele patients. A woman who is the wife of a hydrocele patient reported, “Had I know about the hydrocele of my husband, I could have refused to marry him.” About half of the women whose husbands were suffering from hydrocele said that their husbands had this disease before marriage. Approximately two-thirds of them alleged that the husbands' families had not disclosed their husbands' disease prior to the marriage, and these women expressed the feeling of having been deceived. Some women also expressed their inability to choose a bridegroom due to their economic situation and family customs. The women were asked a hypothetical question querying whether they think getting a spouse for a hydrocele patient is difficult. More than half of these participants said that it is difficult to get spouse for a hydrocele patient. Specifically, if a girl knows beforehand about the disease of the bridegroom, she may not accept that proposal. However, some women respondents (34%) opined that it is not a problem, as hydrocele can be removed by surgery.

The community members also felt similarly and said that people do not prefer to give their daughters to a hydrocele patient. Therefore, the hydrocele patients marry with little or no dowry under a compulsive situation. Often they marry girls from lower socioeconomic strata. One person explained, “It is difficult for a filariasis patient to get a girl by choice for marriage. Normally he gets married to a girl of lower economic status. … Parents offer their daughter to such a patient only under compulsive situations.”